Download CARE AFTER LUNG TRANSPLANT Follow-Up

CARE AFTER LUNG TRANSPLANT
Follow-Up Appointments and Testing
Clinic Visits
After discharge from the hospital, lung transplant patients will
see their surgeon once, about a month after the transplant surgery.
Patients will follow up with their transplant pulmonologist every two
to three weeks after their hospital stay. After the first several months an individual plan for
follow up care will be developed for you. Once a lung transplant patient becomes stable, they
will minimally need to follow up with the transplant pulmonologist every three months and
as needed.
On the Day of Your Appointment
You will see many people from your transplant team including a transplant pulmonologist,
nurse coordinator and social worker.
On the morning of your appointment, you may eat and take all your medications except
for your Tacrolimus or Cyclosporine Neoral until your blood draw is completed. Once your
blood specimen is collected, you may take your Tacrolimus or Cyclosporine Neoral medication.
What to Bring to Your Clinic Visit
• Your Tacrolimus or Cyclosporine Neoral morning medication dose to take after your
blood draw
• Pain medication if needed
• A snack
• Your list of medications
• A list of any refills you may need
• A list of questions that you may have
• Your caregiver
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Blood Draw, Pulmonary Function Test and Chest X-Ray Check-In Procedure
When you arrive for your follow-up appointment, you will check in at your scheduled clinic
area. Any laboratory or chest x-ray orders will be waiting for you at the clinic check-in area.
The clinic staff can help direct you to the chest x-ray and laboratory areas to have the ordered
testing.
Blood Medication Trough Levels
A trough level is the measurement of the drug level in the blood at the time when it is the
lowest. It happens just before the next dose is due. Trough levels should be within one hour of
when your medication is to be taken.
Report to the Emergency Department for the Following Conditions
• A major change in your breathing or need for oxygen
• Fever over 101
• Nausea and vomiting, unable to keep down your transplant medications
• Severe pain
• Any serious or life-threatening medical condition
Your local emergency department medical staff can contact our lung transplant team any time
day or night to discuss your case as needed. Often transfer or admission to a lung transplant
center is requested. The local emergency department or treating doctor will need to contact
our lung transplant program to arrange for the transfer process.
University of Michigan Emergency Department: 734-936-6666
University of Michigan Pulmonary Fellow on Call (24 hrs. a day): 734-936-6267
Rejection and Infection
The two most common complications after lung transplant are rejection and infection. The
signs and symptoms of rejection and infection are very similar. Rejection and infection can
also be present without any symptoms. Lifelong follow up and testing, as recommended by
our lung transplant center, is essential to carefully monitor for lung transplant complications.
You also will have to take lifelong medications to prevent both rejection and infection after
lung transplant.
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Signs and Symptoms of Rejection or Infection
• Increased shortness of breath – especially with activity (stairs, carrying items)
• Low grade fever 99-100 F
• Fatigue, chills, aches
• Cough
• Chest congestion
• A decrease in lung function testing
Allograft Rejection
Your body will recognize the transplanted lung as a foreign object and the body’s normal
response will be to try to fight or reject it. After transplant surgery, you will be prescribed
immunosuppressive medications to help your immune system prevent rejection. Rejection
is very common within the first six months following lung transplant, but can occur at any
time. Acute rejection can often be treated successfully, especially if the signs of rejection are
recognized early.
Rejection is diagnosed by a lung biopsy which is obtained during bronchoscopy. Since
rejection is common for the first six months after lung transplant, you will need to have
routine surveillance bronchoscopies for the first year after transplant. You will be scheduled for
these bronchoscopies which will be performed at the University of Michigan Hospital.
Medications to prevent rejection will need to be taken for life following lung transplant. If
you have a rejection episode, a treatment plan typically will be arranged at your home. A
visiting nurse will place an IV catheter and administer IV steroids. Typically high dose IV
steroids are administered for three days followed by high dose oral steroids (Prednisone) that
are gradually reduced. Your immunosuppressant medications will be adjusted and follow up
testing for rejection will be ordered. Acute rejection is often reversible.
Infection
Immunosuppression medications limit your body’s ability to fight infection so you will be
at risk for other infections. Many types of infections such as bacterial, viral, and fungal
infections can be a problem after lung transplant. Lung transplant patients will need to take
anti-infective medications to prevent some common infections after transplant. Cultures to
monitor for infections are obtained during bronchoscopy. If an infection is detected, it may
be treated with oral, inhaled, or IV medications. If IV treatment is needed, often home IV
therapy with a visiting nurse agency will be arranged.
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Bronchoscopy
The insertion of a fiberoptic tube through your mouth or nose into your lungs under conscious
sedation is termed “fiberoptic bronchoscopy.” This procedure allows the doctor to examine
the airways and test for infection and/or rejection. Regular, routine bronchoscopies will be
scheduled during the first year after lung transplant to check for rejection and infection.
Bronchoscopies are done at three weeks, six weeks, three months, six months, one year and as
needed when rejection or infection are suspected.
The lung transplant bronchoscopies will be performed
at the University of Michigan. Bronchoscopy is an
out-patient procedure. Sedation is given with the
procedure so a driver must be with you before the
procedure will begin. The bronchoscopy preparation,
procedure, and care following the procedure generally
take three to four hours.
A bronchoscope is used
to view the airways
and check for any
abnormalities
Bronchoscope
For your bronchoscopy please:
• Do not eat or drink after midnight before your procedure
• You may take your morning medications with a sip of water before your procedure
• Do not take your Insulin before the procedure as you will not be eating
• Have a driver with you when you arrive for the procedure. You will not be able to drive
following the procedure and the driver must be with you before the procedure will be
started.
Life After Lung Transplantation
• Do not smoke and avoid second hand smoke after lung transplant.
• Call the transplant clinic if you are not feeling well. Do not wait for symptoms to get
worse. The sooner your transplant team becomes aware of an issue the better.
• Remain within a four hour range of UMHS Transplant Center for a minimum of three
months after lung transplant.
• Continue cough and deep breathing exercises and increase your physical activity.
These
should become easier to do following transplant.
• Lifting restrictions – you will have a 10 lb upper arm lifting limit for at least six weeks
after lung transplant. The lifting weight limit will then be increased by your transplant
doctor.
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• Avoid activities that are hard on the chest such as baseball, bowling, golf, hunting, etc. for
at least three months after surgery. Wait to be cleared for the activity by your doctor.
• Avoid soaking the incision area for at least six weeks after transplant and clear with your
doctor. This includes avoiding activities such as swimming and taking a bath in a bathtub.
You will be able to shower during this recovery time.
• Do not drive for at least one month after lung transplant surgery and until you’ve been
cleared to drive by your doctor. You must no longer be taking narcotic pain medications
before you are safe to drive. You should always wear a seatbelt
while driving or riding in the car.
• Do not travel in an airplane until cleared by the transplant
team.
• Avoid contact with people who are sick, inhaled irritants and
mold after transplant.
•Wear a mask to the hospital and while in crowded areas for
three months post-transplant.
•
Always wear a mask when entering construction areas
because mold and dust are often in the air.
•Wear a mask and gardening gloves when gardening. Avoid mulch and other potentially
moldy substances.
• Do not handle or have birds or reptiles as pets and do not empty litter boxes.
• Avoid grapefruit and grapefruit juice after transplant as it has many medication
interactions.
• Avoid alcohol while taking anti-fungal medications that impact your liver.
Itraconazole
and Voriconazole are typical anti-fungal medications used after lung transplant. You should
not drink alcohol while taking these medications.
• You may resume sexual relations when you feel comfortable to do so.
Avoiding pregnancy
lifelong after lung transplant is recommended by our program for both males and females.
Exposure to immunosuppressive medications may cause harm to the fetus (immediate and
long term). Birth control pills often may not work after transplant due to many medication
interactions. Two forms of birth control are recommended. Surgical birth control such as an
Essure procedure, tubal ligation, or vasectomy can be performed after you have recovered
from transplant. Condoms should be used to protect from sexually transmitted diseases.
• Wear sunscreen (SPF 30 or greater), avoid extended sun exposure, and avoid tanning
booths or beds. Transplant medications increase your risk of developing skin cancer.
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• Do not have any routine dental cleanings or procedures until six months after
transplant. You will need to take an antibiotic one hour before any dental procedure
including cleanings after transplant.
• Check with the lung transplant office before receiving a vaccine. You cannot have live
vaccines after transplant. It is often recommended that immediate family members of a
transplant patient, also not receive live vaccines. Precautions may be necessary if a family
member does receive a live vaccine. Discuss this with your transplant coordinator. The
flu shot and pneumonia vaccine are safe after transplant and may be given to you at a lung
transplant follow-up appointment.
• Do not eat grapefruit or drink grapefruit juice as it interacts with many medications.
• Attend a physical therapy or lung (pulmonary) rehabilitation program to assist with
increasing your activity tolerance. Usually your transplant team arranges for you to start one
of these programs about four to six weeks after transplant.
• Develop a schedule to make sure you take your transplant medications after lung transplant
as instructed.
• Call for medicine refills ahead of time. Do not wait until you are out of a medicine to
request a refill. Some transplant medicines will not be available and need to be ordered by
your pharmacy. Insurance may require the transplant office to get authorization to cover a
medicine. Authorizations may take a few days to receive. Generally, we suggest that when
you have seven days left of a medicine that you call for a refill.
• Notify your transplant team of any new medicines that you start taking – prescribed, over
the counter, or herbal.
• Notify your transplant team of any changes in your health such as a new medical
condition or surgical procedure. Also please contact our office with financial changes,
stressful issues, or other concerns. Please notify us if you are having a hard time getting your
medications or with follow-up appointments after surgery.
• Have transplant lab work completed as instructed by the transplant team.
• Avoid taking non-steroidal anti-inflammatory medications (NSAIDS) after transplant.
Motrin, Aleve, Advil, Ibuprofen are examples of these types of medications to be avoided
after transplant. Taking these medicines with your transplant medicines can be harmful to
your kidneys.
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• Maintain a healthy weight by eating a healthy diet after transplant.
• Patients usually do not feel well enough to return to school or work until three to six
months after lung transplant. Please discuss your plans to return to these activities with
your transplant team to develop a plan that is best for you.
• Normal symptoms after lung transplant surgery include shakiness/tremors (side effect of
Tacrolimus or Neoral), hard time sleeping (side effect of Prednisone), a tight feeling around
the lower rib cage area, some nausea, ankle swelling, moodiness or feeling more emotional
(Prednisone side effect).
Incision and Wound Care
Clean your incision by showering daily. If there is any redness, swelling, or drainage, contact
your nurse coordinator.
You may be discharged with a JP ( Jackson-Pratt) drain in your chest. If so, you will be
instructed on how to empty and care for the drain. Please record the JP drain output daily.
Step 1
Step 2
Step 3
You may have some drainage from your incision, previous chest tube, or JP drains sites. This is
not unusual. If you have drainage, use clean, absorbent material (towels, gauze, feminine pads,
baby diapers) to soak up the fluid. Note what the fluid looks like, any odor, and discuss the
appearance and amount with your transplant coordinator.
Do not take a bath (in a bathtub), use a spa or hot tub, swim in a swimming pool, lake, or
pond until your incision is completely healed and cleared by the lung transplant team.
Staples and sutures will be removed about one month after surgery at a clinic visit with your
transplant surgeon or pulmonologist.
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Pain
The incision area will be painful for weeks to months after surgery. The level of pain decreases
with time and the pain sensation will also change over time. There will be days when the
incisional pain may feel sharper and other times when the pain is more of a dull ache.
Numbness around the area of your incision is normal. You will be prescribed pain medications
at discharge. Your team expects that your need to continue taking pain medications will
decrease in the weeks following transplant. Remember to avoid taking non-steroidal antiinflammatory medications (NSAIDS) after transplant, such as ibuprofen, as taking these
medicines with your transplant medicines can be harmful to your kidneys. A heating pad and
stretching exercises can also help with incisional discomfort after lung transplant.
Diabetes Mellitus
Post-transplant diabetes mellitus (PTDM) is a common medical condition after lung
transplant. Early detection of high blood sugars after transplant and treatment is very
important. You may have a specialist (endocrinologist) or your local primary care doctor
manage your blood sugar. Your transplant pulmonologist will work together with your doctor
for blood sugar control but will not manage your diabetes. Diabetes care will be with your
endocrinologist or primary care doctor.
Constipation
Constipation is often a problem due to decreased activity and the use of pain medications.
Stool softeners can be used to help keep stools soft. If you do not have a bowel movement
within two days of your transplant, advise your transplant team. After you are at home, if you
have constipation even with the stool softener, please notify your transplant coordinator.
Dental Care
Since many organisms are present in the mouth and you are immunosuppressed following
transplant, you should do the following:
• Brush and floss your teeth at least twice a day
• Do not have any elective dental cleanings or procedures during the first six months after
lung transplant
• See your dentist every six months and as directed
• Inform your dentist about your transplant and medications
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• Take an antibiotic one hour before any routine dental care such as cleaning or any
procedures. For more invasive dental work, antibiotics may be prescribed in coordination
with your dentist and transplant doctor.
Your Local Physician/Doctor
It is necessary to have a primary care doctor see you for general health maintenance and
non-transplant related care. We recommend you see your primary care doctor within the
first few weeks after transplant and at least once a year. The transplant team cannot provide
routine health care for you, such as monitoring your blood pressure or diabetes. It is important
to continue your routine health maintenance activities (mammograms, prostate screening)
through your primary care doctor.
Always make sure to inform us if you change your primary care doctor as the lung transplant
team will be sending the doctor updates after your follow up appointments. It is important
that your transplant team is informed of any new medications since many interact with
transplant medications.
Your Local Lab
Initially, you will need to have labs drawn weekly after transplant. A visiting nurse will draw
the labs for you for the first few weeks after discharge from the hospital. Once you are well
enough and no longer require a visiting nurse, you will need to locate a blood drawing lab near
your home. You may select a University of Michigan Lab or another lab near your home. A
list of University of Michigan blood drawing stations can be found in the Resources section of
this book.
The transplant team will provide you with a standing lab order for the needed blood tests. If
you are using a local lab that does not have the capability to run a drug level blood test then
you will need to mail your blood specimen to the University of Michigan Transplant Lab for
testing. You will be provided mailers and labels to mail your blood specimen to our lab. Be
sure that your name and date of birth are on the blood specimen. Only the drug level tube of
blood will be mailed to our lab. All other blood tests ordered can be performed at your local
lab and results faxed to our office.
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Active Participation in Your Health Care
In order to have a successful lung transplant outcome, it is crucial that you and your
caregiver develop a positive relationship with the transplant team. The transplant experience
can include both ups and downs and the team wants to develop regular, consistent, and
accurate communication about all parts of your care. This communication may be related to
medications, symptoms, testing, outside hospital stays, and discussions about managing the
health of your transplant. Some of this communication may be with doctors, nurses, transplant
coordinators, social workers, or other support staff. Another very important piece of success
after lung transplant is your willingness and ability to follow the health care advice of your
transplant team. Caring for your new transplanted organ includes taking your medications as
directed, having blood tests done when instructed, regular follow up, and contacting us when
you are not feeling well. The entire lung transplant team is committed to providing quality
service and patient care to you and helping you achieve the best possible transplant outcome.
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